The Unbearable Decision

Times get rough with Dayna, and in this age of social media we tend to post the frustrations of those times on sites like Facebook. Welcome to venting in the new digital world. When we do so, we often get questions about housing for Dayna as she continues to get older. When will we decide that Dayna needs to be placed in a group home? Have you looked yet? Wouldn’t she be happier? Wouldn’t you be happier?

There are many issues that come up when you consider moving your child, who may already be an adult, to a group home. Some of those issues are personal, and some are logistical and out of your control.

The logistical issues are easier to deal with personally since you don’t have a choice. Truth is, there are not many places to send your child. No matter where you live, there are only a few spots for many individuals who could use them. You are often on a wait list, sometimes for years to get a placement. Even if you get one, you have to hope that it is a placement in a facility with a good reputation and the ability to care for someone with your child’s specific needs. There are lots of unfortunate stories about insufficient care, individuals being lost or even abuse.

And that’s where the personal side comes in, and the personal issues are much harder to deal with. This past week Dayna has slipped into a series of bad behaviors. Lots of yelling and defiance seemingly out of nowhere. We did everything right, and it still happened. Sleep continues to be an issue. Last night was very reminiscent of the nights before Dayna left for a six week in-patient stay last winter at a behavioral center to help control her issues. All of this leads to a roller coaster of emotions for everyone in the house. We have been on this roller coaster for many years now, and burn out is starting to set in. The feelings of helplessness from lack of support, the sore body from lack of normal sleep, the scattered thoughts throughout the day from lack of focus. It all starts to take a toll. I searched Google for answers while up last night, and I found another blog post that was written recently by another family, with almost the same issues (I’ll include a link at the bottom). More importantly, they have the same struggles in making the decision to consider a group home setting.

On the surface, an outsider may wonder what is so hard about the decision. Caring for a special needs child, especially one like Dayna, can be a 24x7x365 job. The family is often isolated, unable to do things other families do. Going to a picnic or party at another family’s house is near impossible, so most vacations are definitely impossible. The lack of sleep, the frustration, the exhaustion effect everyone. You can see all of these issues in previous posts of mine. So why is the decision so hard?

Well, for one, its your child. In our case, a child that is in a 17 year old body but without the ability to let you know if someone is doing something to her. She needs constant care and supervision for a reason…..she can’t take care of herself. I know people that have a hard time handing the keys to their car to someone else, can you imagine handing your child over if you knew they wouldn’t be able to tell you what happened after you left? There are times, like last night, that Dayna has pushed me to the very edge. She may be yelling in my face, may be screaming in her room, both at ungodly hours in the middle of the night. I find my self exhausted, worn down to the bone, and gritting my teeth as she repeatedly yells broken phrases like “ONE MORE HOUR!!!” or “WHEN YOU WAKE UP IN THE MORNING!!”. But here’s the thing, she is my daughter, and I love her. If she can push me to that point, what will happen when she pushes an employee of a home to that point. I know….they are ‘trained to deal with situations like that’. Unfortunately lots of people are trained to handle situations in their jobs and later are found to be very bad at it. When you add the fact that someone like Dayna can not let others know if something is happening, you have to wonder how quickly someone may snap, even for a second. It’s awful to think about.

Lately all I want is to have a normal life at home. But I also think about last winter. Dayna was placed in the in-patient program for six weeks. She was unable to leave, period. Christmas, New Years….she was to stay in a locked facility with no option to come home. She didn’t understand it, and I could barely handle it. Did I sleep and feel better?….no. My mind was a wreck, only to be made worse with each visit followed by leaving her there. On one visit, she was fine for a while but then started saying “go home?”. As it became apparent to her that she had to stay, she grew increasingly upset and started to yell and cry. She wouldn’t listen to instructions and would pull away. Suddenly a man who was more than twice my size walked in, and started to block her. They told us all to leave. We had to walk away from her, while she looked in horror. We could hear her screaming and crying for us and we walked down the hall to be let out. Do you think I felt good that night knowing that I was guaranteed to be able to sleep without interruption? Do you think I looked forward to the next day knowing that we would not have to deal with a possible outburst? Not at all, I felt like hell. It was just as hard knowing she was there, knowing she was confused, and not knowing at all what was going on. Her time last winter was a test for us to see what it would be like living in a group home, I personally I failed the test. That’s why the decision is so hard. No matter how difficult it is at home, placing Dayna into an unknown situation is still an unbearable decision.

If I had my way, if I had been successful and had the kind of money the ultra-rich had, I would build a home for our entire family. It would include a two bedroom apartment for Dayna and a caregiver that we would hire. A place where Dayna would be around the rest of her family, but with the ability to be cared for so the rest of the family could also continue living normally. A place where she would have some independence, but also be within the protection of her parents and siblings. A place where she would know she was loved and could feel secure. That’s the home I want to put her in.